Little warrior battles a rare disease with pluck


And his family tries to collect Rs 16 cr needed for drug to save child with SMA

His family calls him the little warrior. No wonder, for despite suffering from a rare disease that needs the world’s most expensive drug for cure, this 2-year-8-month old boy is a good-natured and jovial child who keeps upbeat, watching cartoons, of which Peppa Pig is his most favourite.

A resident of Lingampalli, Hyderabad, Ayaansh suffers from Spinal Muscular Atrophy (SMA). His father Yogesh Gupta told Mirror that when Ayaansh was about eight months old and he could not crawl or sit up, the family realised there was something wrong. He had a low body tone, struggled to have milk or food, and had no neck control. “The paediatrician used to say that it could be a milestone delay. But, when he did not achieve any milestone at nine months, we visited a neurologist and were shocked to hear that he had SMA,” Gupta said.

That was in June 2019, and the doctors said they were helpless as there were no medicines in India. Ayaansh’s mother Rupal Gupta said their world collapsed when they heard this diagnosis. “We sat outside the hospital, broken. The doctor told us that life expectancy could be around four to five years. One doctor even asked us to go home and just give the child as much love as we can,” she said.

We will import it from the US if we are able to collect Rs 16 crore. I request NGOs, philanthropists and the govt to come forward and help­

–Yogesh Gupta, Ayaansh’s father

The family then slowly began researching, requesting people and different NGOs to get help.

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Life has been tough for Ayaansh. As his immune system is weak, he gets infections very easily and he takes time to recover as his chest is not fully developed. Doctors say he has what is known as a ‘pigeon chest’ (Pectus carinatum), because of which he has difficulty breathing and cannot cough. So when he has a infection, mucus has to be sucked out through a machine by putting a catheter inside his chest through the mouth. This has to be done two-three times a day sometimes.

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The family’s hopes are pinned on a wonder drug – Zolgensma. Dr Ramesh Konanki, consultant and paediatric neurologist, at Rainbow Children’s Hospital, Hyderabad, said, “There was no therapy for this rare and life threatening condition about five years ago. Currently, there are three therapies but none are available in our country. Out of the three – genes therapy is the most promising. This is given as a single dose and can be life saving,” he said, in a video call with Mirror.

The medicine costs around $2.125m (around Rs 16 crore). Like Ayaansh, his parents are also fighters. They have so far been able to raise Rs 1.4 crore in 10 days. “We will import it from the US if we are able to collect Rs 16 crore. I request NGOs, philanthropists and the government to come forward and help, as no upper middle class person can afford Rs 16 crore. I will also request celebrities to come forward and help us and spread this campaign,” the father said.

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Sagar Biswas

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